GBS|CIDP Foundation International Position on Flu Shots and Vaccinations
**This information is intended for general educational purposes only. Any decisions regarding vaccinations should be made in consultation with your primary doctor.**

You can find more information on the flu shot and GBS here

Learn about The National Vaccine Injury Compensation Program

Vaccines and Guillain-Barré Syndrome
Key-Facts-About-Seasonal-Flu-Vaccine

Summary: Vaccines are usually safe for most people; their potential benefits usually outweigh their small risks. However there is a lack of data to guide the use of immunizations in former GBS patients. For the rare person who developed GBS within four to six weeks of receiving an immunization, the Foundation advises to avoid the same immunization in the future. The decision to receive a vaccination is likely best made by conferring with the patient’s primary physician and following guidelines in the product literature.

History of Guillain-Barré Syndrome and Vaccines
GBS is a rare disorder caused by damage of the peripheral nerves. Major features are weakness, paralysis, and sometimes even breathing issues. Most patients recover but some are left with long term weakness. Infections commonly precede GBS and are thought to “trigger” GBS through a process called “molecular mimicry.” In this process, the body’s immune defense system attacks an infecting microbe and then inadvertently attacks peripheral nerves that “look” similar to that microbe.

The start of an American vaccination program against swine flu in the fall of 1976 was followed by more cases of GBS in vaccine recipients than would have been expected by chance. This experience raised concerns that future flu or other vaccines might also increase the risk of developing GBS.

However, a study of adverse events of flu shots given during the two flu seasons after 1976 showed no increased risk to developing GBS[i]. A recently published study looked carefully at vaccine recipients over the course of 11 years, 1995-2006, and found no increased risk of developing GBS from influenza or other vaccinations[ii]. Other studies suggest only a rare association with influenza vaccine citing an incidence of 1 or 2 excess cases of GBS over expected per million vaccinations[iii].

The risk of a former GBS patient developing GBS again from a vaccination is not known as the complication rate from vaccinations in recovered GBS patients has not been properly studied. Members of the GBS|CIDP Foundation Global Medical Advisory Board have deliberated on the safety of immunizations for former GBS patients and offer the following guidelines: For the rare person who developed GBS within four to six weeks of receiving an immunization, it seems prudent to avoid that vaccination in the future. For those whose GBS did not follow soon after a vaccination, there is no reliable data to indicate the risk of developing GBS after a vaccination.

Ultimately, former GBS patients should discuss the pros and cons of receiving a vaccination with their primary physician to evaluate its benefits and risks. Influenza is dangerous, accounting for 40,000 or so deaths each year in the US from complications, especially in the elderly and those with chronic illnesses (chronic lung disease, diabetes, etc.). The decision about a former GBS patient receiving or declining a flu shot or other immunization should be well thought out. Discussing this matter with the primary physician is likely the best means to assess a vaccine’s value.

Vaccines and Guillain Barre Syndrome 2018

[i] Schonberger IB et al. Guillain-Barre Syndrome: Its Epidemiology and Association with Influenza Vaccination. Ann Neurol 1981;9 (Suppl 1); 31-38

[ii] Baxter R et al. Lack of Association of Guillain-Barre Syndrome with Vaccinations. CID 2013; 57: 197-204

[iii] Lasky T et al. The Guillain-Barre syndrome and the 1992-1993 and 1993-1994 Influenza Vaccines. N Engl J Med 1998; 339: 1797-1802

Hi Rob, I have to take an Antihistamine before Privigen IVIG due to allergic reaction when restarting back on it from Hizentra never had the problem with Privigen before but that’s me. Gabapentin, as you may know by now, can cause a rash and can be worse for some people if they go out in the sun too much.
Also, other medications can cause this article shows. https://www.cchchealthcare.com/bad-sunburn-your-medication-might-be-to-blame/

Hi robm,
Great news that you are heading in a good direction. Are you just on ivig or do you take other medications?

From my journey with CIDP it has stopped the progression but not healed it, I am on 75grams of Privigen every two weeks that’s been for the last two years and no other medications due to allergies and others not working.
So in saying all that as I have come to know through this forum and personal research everyone had a different journey some groups of people respond quickly others slowly and some people no response for a very long time.

Hi Mike sorry to hear your not going so well. I was diagnosed with CIDP 2 years ago everyone seems to be different but what you are describing seems to be quick onset which is not normally associated with CIDP more like GBs but my sister had similar symptoms with MS. There are so many different autoimmune hope they get on top of it quickly.

Thanks, Jim-LA for the info. I started back on Privigen IVIG 75mg which caused my airways to start shutting down which I never experienced before only had back pains and really bad headaches, it seems my immune system may be rejecting Privigen/immunoglobulin treatments looking at the recent response to Hizentra and now Privigen.

Hi Jim-LA
I have gone from being diagnosed with MFS to now CIDP I was wondering a few things how long has it been for you, I was originally on Ivig then Scig but have allergy reaction from Scig after 8 weeks has this happened to you, I am being moved back to Ivig I can’t have Prednisone due to allergy. Gaberpentin works for awhile but now doesn’t. Neurologist said I should be getting better but I am not.